FETAL ALCOHOL SPECTRUM DISORDERS The Basics Understanding Fetal

FETAL ALCOHOL SPECTRUM DISORDERS The Basics

Understanding Fetal Alcohol Spectrum Disorders This section includes: • • Fetal Alcohol Spectrum Disorders (FASD) Terminology FASD Facts Cause of FASD and Alcohol and Women FASD and the Brain Number of People With an FASD

Fetal Alcohol Spectrum Disorders (FASD) • Umbrella term describing the range of effects that can occur in an individual whose mother drank alcohol during pregnancy • May include physical, mental, behavioral, and/or learning disabilities with possible lifelong implications • Not a diagnosis +

Terminology • Fetal alcohol syndrome • Term first used in 1973 by Drs. Smith and Jones at the University of Washington • One of the diagnoses used to describe birth defects caused by alcohol use while pregnant • A medical diagnosis (760. 71) in the International Classification of Diseases (ICD)

Terminology Pregnancy Alcohol + • Fetal alcohol effects (FAE) • Alcohol-related birth defects (ARBD) • Alcohol-related neurodevelopmental disorder (ARND) May result in • Partial FAS (p. FAS)

FASD Facts • 100 percent preventable • Leading known cause of preventable mental retardation • Not caused on purpose • Can occur anywhere and anytime pregnant women drink • Not caused by biologic father’s alcohol use • Not a new disorder

Cause of FASD • The sole cause of FASD is women drinking alcoholic beverages during pregnancy. • Alcohol is a teratogen. “Of all the substances of abuse (including cocaine, heroin, and marijuana), alcohol produces by far the most serious neurobehavioral effects in the fetus. ” —IOM Report to Congress, 1996

FASD and Alcohol • All alcoholic beverages are harmful. • Binge drinking is especially harmful. • There is no proven safe amount of alcohol use during pregnancy.

FASD and Alcohol • Binge = 4 or more drinks on one occasion for a women, 5 or more for a man • Drink = 12 ounces of beer, 5 ounces of wine, or 1. 5 ounces of hard liquor = =

Size Matters Beer 12 oz 5 oz 1. 5 oz 3. 5 oz 2. 5 oz

Size Matters VS. 12 oz. 16 oz.

Alcohol and Women • If a woman is pregnant, it does not matter what form the alcohol comes in. • Wine spritzers, alcohol pops • Beer Check labels • Wine coolers for alcohol • Light beer, nonalcoholic beer content.

FASD and the Brain • Prenatal alcohol exposure causes brain damage. • Effects of FASD last a lifetime. • People with an FASD can grow, improve, and function well in life with proper support.

FAS and the Brain Permission to use photo on file.

FAS and the Brain A A B C A. Magnetic resonance imaging showing the side view of a 14 -year-old control subject with a normal corpus callosum; B. 12 -year-old with FAS and a thin corpus callosum; C. 14 -year-old with FAS and agenesis (absence due to abnormal development) of the corpus callosum. Source: Mattson, S. N. ; Jernigan, T. L. ; and Riley, E. P. 1994. MRI and prenatal alcohol exposure: Images provide insight into FAS. Alcohol Health & Research World 18(1): 49– 52.

FAS and the Brain A These two images are of the brain of a 9 -year-old girl with FAS. She has agenesis of the corpus callosum, and the large dark area in the back of her brain above the cerebellum is essentially empty space. Source: Mattson, S. N. ; Jernigan, T. L. ; and Riley, E. P. 1994. MRI and prenatal alcohol exposure: Images provide insight into FAS. Alcohol Health & Research World 18(1): 49– 52.

Number of People With an FASD • No one knows for certain how many individuals are born each year with an FASD. • No one knows how many are living with individuals an FASD. Photo property of SAMHSA.

Prevention and Risk Reduction This section includes: • • • Prevention Is the Only Solution Talk About Alcohol Use Who Needs To Know Raise Awareness in Schools Raise Awareness in the Community

Prevention Is the Only Solution • Ask all women of childbearing age about alcohol use: • Ask routinely at every medical appointment. • Ask at appointments in various systems. • Ask in a nonjudgmental manner. • Use effective screening tools. • Ask about possible prenatal exposure. Photo courtesy of Microsoft.

Talk About Alcohol Use • Talk about the effects of alcohol on an individual and on a fetus: • Begin at an early age, such as elementary school. • Indicate that stopping drinking at any time during pregnancy will help the fetus. Convey the message: If you’re pregnant, don’t drink. If you drink, don’t get pregnant.

D O N O T T A K E T H E R I S K D R I N K

Who Needs To Know • Women of childbearing age? • Women who have a history of alcohol or other drug use? • Women who are at risk? • Teenagers? • Men? • EVERYONE!

Raise Awareness in Schools • Ask the school to put up posters about drinking and pregnancy. • Include information about FASD in health, science, and physical education classes. • Hold an assembly to talk about the effects of alcohol on a person and on a baby.

Raise Awareness in the Community • Post FASD information in doctors’ offices, treatment centers, and community centers. • Promote FASD Awareness Day (September 9). Visit www. fasday. com for information. • Focus attention on FASD. You can help the entire community.

Symptoms and Difficulties of FASD This section includes: • Overall Difficulties for Persons With an FASD • Primary Disabilities of Persons With an FASD • Typical Difficulties for Persons With an FASD • Secondary Disabilities of Persons With an FASD • Factors Associated With Reduced Secondary Disabilities

Overall Difficulties for Persons With an FASD Information • Taking in information • Storing information • Recalling information when necessary • Using information appropriately in a specific situation

Primary Disabilities of Persons With an FASD • Lower IQ • Impaired ability in reading, spelling, and arithmetic Permission to use photo on file. • Lower level of adaptive functioning; more significantly impaired than IQ Streissguth, et al. (1996)

Typical Difficulties for Persons With an FASD Sensory Integration Issues • Are overly sensitive to sensory input • Upset by bright lights or loud noises • Annoyed by tags in shirts or seams in socks • Bothered by certain textures of food • Have problems sensing where their body is in space (i. e. , clumsy)

Typical Difficulties for Persons With an FASD Memory Problems • Multiplication • Time sequencing ?

Typical Difficulties for Persons With an FASD Information Processing Problems • Do not complete tasks or chores and may appear to be oppositional • Have trouble determining what to do in a given situation • Do not ask questions because they want to fit in

Typical Difficulties for Persons With an FASD Information Processing Problems • Say they understand when do not Straighten up your room and put your toys away. Do you understand? YES! (How do you straighten up? Make sure the bed/chair is straight? ) they • Have verbal expressive skills that often exceed their level of understanding • Misinterpret others’ words, actions, or body movements • Have trouble following multiple directions

Typical Difficulties for Persons With an FASD Executive Function Deficits • Go with strangers • Repeatedly break the rules • Frequently do not respond to point, level, or sticker systems • Have trouble with time and money • Do not learn from mistakes or natural consequences • Give in to peer pressure I’m late!

Typical Difficulties for Persons With an FASD Self-Esteem and Personal Issues • Function unevenly in school, work, and development • Experience multiple losses • Are seen as lazy, uncooperative, and unmotivated • Have hygiene problems

Typical Difficulties for Persons With an FASD Multiple Issues • Cannot entertain themselves • Have trouble changing tasks • Do not accurately pick up cues social

Secondary Disabilities of Persons With an FASD • Mental health issues • Disrupted school experience • Confinement in jail or treatment facilities • Alcohol and drug problems • Trouble with the law • Dependent living • Inappropriate sexual behavior • Employment problems Streissguth, et al. (1996)

Secondary Disabilities of Persons With an FASD Percent of Persons With FAS or FAE Who Had Secondary Disabilities = Age 6+ = Age 12+ = Age 21+

Factors Associated With Reduced Secondary Disabilities • Stable home • Recognized disabilities • Early diagnosis • Diagnosis of FAS • No violence against oneself • Good quality home from ages 8 to 12 • More than 2. 8 years in each living situation • Basic needs met for at least 13 percent of life Streissguth, et al. (1996)

Diagnosis This section includes: • • Diagnosing Fetal Alcohol Syndrome Differential Diagnosis of Features of FASD and Mental Health Disorders Risks to a Child of Not Accurately Identifying and Treating FASD • Risks to an Adult of Not Accurately Identifying and Treating FASD • Benefits of Identification and Treatment

Diagnosing Fetal Alcohol Syndrome • Prenatal maternal alcohol use • Growth deficiency • Central nervous system abnormalities • Dysmorphic features • Short palpebral fissures • Indistinct philtrum • Thin upper lip Source: Astley, S. J. 2004. Diagnostic Guide for Fetal Alcohol Spectrum Disorders: The 4 -Digit Diagnostic Code, Third Edition. Seattle: University of Washington Publication Services, p. 114. Caucasian African American

Differential Diagnosis of Features of FAS • Differential diagnosis is very important because: • Many syndromes can cause features that look like FAS. • Facial features alone cannot be used to diagnose FAS.

FASD and Mental Health Disorders • Prenatal alcohol exposure may lead to severe behavioral, cognitive, and psychiatric problems. DSM-IV • FASD is not a psychiatric disorder. • FASD can co-occur with a mental health or substance abuse disorder.

Risks to a Child of Not Accurately Identifying and Treating FASD • Loss of family • Increased substance use Photo courtesy of Microsoft. • Premature death

Risks to an Adult of Not Accurately Identifying and Treating FASD • Unemployment • Jail • Loss of family • Premature death • Homelessness • Increased substance abuse

Benefits of Identification and Treatment • Helps decrease anger and frustration for individuals, families, providers, and communities by helping them understand that negative behavior results from the disability and is not willful • Helps people with an FASD succeed by focusing on why they have trouble in certain programs • Helps improve outcomes • Helps prevent future births of children with an FASD

Treatment This section includes: • • General Issues With FASD Intervention Issues Systems of Care for Persons With an FASD Economic Costs of FAS

General Issues With FASD • Often undiagnosed among persons without FAS facial features • More difficulties seen in those without FAS facial features and with higher IQs • Adaptive functioning more impaired than intelligence

Intervention Issues • Failure in traditional mental health treatment programs • People with an FASD may know what they need to but cannot follow through • Caregivers with unrecognized FASD often labeled do neglectful, uncooperative, or sabotaging treatment because they do not follow instructions • Limited FASD-specific treatment services

Systems of Care for Persons With an FASD • Health • Education • Social and community services • Legal and financial services

Systems of Care

Economic Costs of FAS alone cost the United States more than $4 billion in 1998. • The average lifetime cost for each child with FAS is $2 million. Inc rea se dc os ts • • $1. 6 million for medical care services • $0. 4 million for loss of productivity Lupton, Burd, and Harwood (2004)

Economic Costs of FAS • One prevented case of FAS saves: • $130, 000 in the first 5 years • $360, 000 in 10 years • $587, 000 in 15 years Increased savings through prevention • More than $1 million in 30 years Lupton, Burd, and Harwood (2004)

Outcomes This section includes: • Strategies To Improve Outcomes for Persons With an FASD • Strategies for Sensory Integration Issues • Strategies for Memory Problems • Strategies for Information Processing Problems • Strategies for Executive Function Deficits • Strategies for Self-Esteem and Personal Issues • Strengths of Persons With an FASD • Paradigm Shift

Strategies To Improve Outcomes for Individuals With an FASD • Ask about possible prenatal alcohol exposure at intake. • Ask about substance use during medical appointments. • Educate families and providers about FASD. • Have a thorough diagnostic workup. Dubovsky, Drexel University College of Medicine (1999)

Strategies To Improve Outcomes for Individuals With an FASD Strategies for Sensory Integration Issues • Simplify the individual’s environment. • Provide a lot of one-to-one physical presence. • Take steps to avoid sensory triggers.

Strategies To Improve Outcomes for Individuals With an FASD Strategies for Memory Problems • Provide one direction or rule at a and review rules regularly. • Use a lot of repetition. time

Strategies To Improve Outcomes for Individuals With an FASD Strategies for Information Processing Problems • Check for understanding. Tell me what you just heard me say. • Use literal language. • Teach the use of calculators and computers. • Look for misinterpretations of words or actions and discuss them when they occur.

Strategies To Improve Outcomes for Individuals With an FASD Strategies for Executive Function Deficits • Use short-term consequences specifically related to the behavior. • Establish achievable goals. • Provide skills training and use a lot of role playing. Photo property of SAMHSA.

Strategies To Improve Outcomes for Individuals With an FASD Self-Esteem and Personal Issues • Use person-first language (e. g. , “child with FAS, ” not “FAS kid”). • Do not isolate the person. • Address issues of loss and grief. • Do not blame people for what they cannot do. • Set the person up to succeed. Congratulations

Strengths of Persons With an FASD • Friendly • Determined • Likable • Have points of insight • Desire to be liked • Not malicious • Helpful Dubovsky, Drexel University College of Medicine (1999)

Strengths of Persons With an FASD • Cuddly and cheerful • Energetic and hard working • Fair and cooperative • Happy in an accepting and supportive environment • Loving, caring, kind, sensitive, loyal, and compassionate • Spontaneous, curious, and involved Permission to use photos on file.

Strengths of Persons With an FASD • Highly verbal • Highly moral—deep sense of fairness • Kind with younger children and animals Photo courtesy of Microsoft. • Able to participate in problem solving with appropriate support

Strengths of Persons With an FASD • Build on strengths of persons with an FASD, such as giving them opportunities to help in the classroom. Photo courtesy of Microsoft • Use teaching strategies that focus on strengths. • Find jobs that use the person’s strengths.

Paradigm Shift “We must move from viewing the individual as failing if s/he does not do well in a program to viewing the program as not providing what the individual needs in order to succeed. ” —Dubovsky, 2000

Resources • SAMHSA FASD Center for Excellence: fasdcenter. samhsa. gov • Centers for Disease Control and Prevention FAS Prevention Team: www. cdc. gov/ncbddd/fas • National Institute on Alcohol Abuse and Alcoholism (NIAAA): www. niaaa. nih. gov/ • National Organization on Fetal Alcohol Syndrome (NOFAS): www. nofas. org • National Clearinghouse for Alcohol and Drug Information: ncadi. samhsa. gov • These sites link to many other Web sites.